Infection Update

7/6/2008

The past 22 hours have been incredibly disappointing. Disappointing because Jessie was on such a roll and doing so well in therapies. Now she will be somewhere to 1 to 2 days behind. We are still in Johns Hopkins Hospital, back to our old room on the 4th floor, awaiting results from blood and CSF cultures. Initial blood and CSF tests were normal. Our Infectious Disease doc came back and swabbed the site - we should have some news about what type of infection is going on by tomorrow morning. Cris came to give me a break after lunch.

There is some good news and a funny story to help brighten our little pity party!

* Jessie is doing great - no fever, no pain, just bored and ready to go back to Kennedy Krieger. We need to tape her saying this so we can play it back to her in a few days when she's preparing to go to therapies!
* We had a very nice visit from Lisa and Rebecca Yim this afternoon. Rebecca is 14 and had a right hemi when she was 7. She is a beautiful young lady and the visit from Rebecca and her mom really made our day.
* Early on in our ER adventure last night, Jessie announced out of the blue that God likes to help us - don't you know? Cris and I both replied that, "Yes! You are right!" and then Cris asked Jessie how she wants God to help her - both of us totally expecting a plea to get out of the ER or a request to go home. Jessie replied, "I want Him to clean my room!" I always knew Jessie was a very forward-thinking girl!

Cris is staying with Jessie tonight and plan on calling it a night early. I think I will do the same. We are looking forward to tomorrow and the blessing of a new day with new possibilities. I know after a good night's sleep, Cris will provide you with fun stories about our wonderful, busy, 4th of July weekend.

Love to you all and thank you for the special prayers for Jessie!

Kristi

Sugery Schedule from Johns Hopkins

Hi all,

We have a pre-surgery and surgery schedule from Johns Hopkins. Although we are scared, and it makes this nightmare all the more real, we are at the same time relieved that Jessie may finally see some relief. She has been having some really good days lately, and we are thankful for that.

The schedule is below, and relatives will be staying with the boys during our times of absense, so the boy's life should be disrupted very little. Also, we plan to try to get a video conferencing going so that Jessie can talk to her family and her big brothers while she is in the hospital and rehab. I'll let you know how that goes.

The Schedule is below:

Pre Surgical Testing
May 12th: Monday – Fly into Baltimore
May 13th: Tuesday - Meet with Dr. Benjamin Carson, Jessie's Neurosurgeon http://www.drbencarson.com/
May 14th – 17th – Epilepsy Monitoring Unit (Under the care of Dr. Eileen Vining, Jessie's Baltimore Neurologist and her assisstant Diana Pillas)http://www.hopkinsneuro.org/epilepsy/doc.cfm/expert/Eileen_Vining
After we are released from the EMU, we will fly home.

Hemispherectomy Surgery ( June 11th)

June 8th: Sunday – Fly into Baltimore
June 9th: 10th – Pre Surgery Evaluation

June 11th: Wednesday – Hemispherectomy Surgery
(The following depends on Jessie's strength and recovery)
June 11th – 14th : Pediatric Intensive Care Unit (PICU)
June 14th – 21st : Johns Hopkins Regular Pediatric Room
June 22nd – July 12th : Kennedy Kreiger in-patient Rehabilitation Center

Please Keep Jessie in your prayers during these critical dates.

With all our love,

Cris, Kristi, Matt, Jake, Josh, and Jessie